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My Journey Begins and I need advice

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Harvell8 View Drop Down
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    Posted: Jan 13 2021 at 9:23pm
Hello all

My name is Lydia and I was diagnosed with TNBC on January 5th.  What I know so far is that my cancer is localized (no lymph nodes involved).  I am in stage 2 and my cancer is a grade III.  I was fortunate enough to learn about TNBC from the American Cancer Society at 7:00 PM and went to the website and discovered the monthly call.  I joined and everyone was so welcoming.  For a newbie who just heard the diagnosis hours earlier, the call was a bit overwhelming.  The great thing that came from the call was the two angels (Karen and Suzanne) that reached out to me and have been helping me navigate all this new information.  

There are two oncologist that I am meeting with to decide which one is the best fit for me.  My decision will be based on which doctor can provide me with both the care and support I will need to get me through to a successful outcome and hopefully not stress my family out.  I asked the doctor I met with today, who is 15 minutes from my home about the cooling booties and mitten to hopefully prevent neuropathy.  She doesn't recommend it, her thought is that the body is going through so much, she doesn't want to add additional stress. If it comes up she can prescribe medication. The doctor I will meet on Friday, who is 50 minutes from my home offers the cooling booties, mittens and even the helmet. 

The recommendation so far is that I receive a standard ACT chemo approach 8 cycles 1 every other week of AC and 1 cycles each week for 12 weeks of T.  If, after meeting the other doctor their is no meaningful difference in the care that I will receive, my preference is to be closer to home and have a non pharma approach with the cooling booties and mittens to avoid neuropathy if possible.  Has anyone used the cooling booties and mittens? Is it effective? I am willing to pay out of pocket if it will alleviate the stress of my family having to coordinate 3-5 hour weekly car pool for 20 weeks ugh. Since they cannot come in with me during my treatment, they will have to sit in the car  for 2-4 hours which they are willing to do.  I don't want to ask that of them unless it is absolutely necessary.

I would so appreciate any advice, guidance or testimonials of the cooling mittens and booties.  

Thank you all in advance.

Lydia




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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2021 at 5:26pm
Hi Lydia, I am so glad that you are getting such great support and info from the different
forums available. It certainly is a learning process with so much information to digest.

So the first time around in 2016 for me I had A/C, no T allergic to Taxanes unfortunately. I was not advised to use the cold mitts/booties. However this time I had Gemzar and Carboplatin and iced for the Carbo which was supposed to reduce my risk of neuropathy by 75%. So I iced 15min prior to injection, 30 min. during injection then 15minustes post injection. So far no neuropathy symptoms for me! Was it unpleasant and somewhat painful , yes. For me the benefit outweighed the risk for sure. 
Here is the link for the booties which I also used on my hands, worked perfectly! These were the most affordable compared to others. So for $50, 2 pairs it was sure worth it!

Best of luck to you. One day at a timeHug
Andrea



Edited by cookie54 - Jan 14 2021 at 5:31pm
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Recon Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Rad11/20-12/20
Xeloda 2/21


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Harvell8 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Harvell8 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2021 at 8:21pm
Hello Andrea:

Thank you so much!  I have been blessed and divinely favored with all the support I have received from the TNBC community.

Lydia


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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2021 at 12:29am
Dear Lydia,

Welcome to our wonderful, caring TNBC family.

As a Patient Advocate, I have helped hundreds of women with TNBC over the last 16 years so I may have a slightly different perspective. I am not a medical professional so please don't change your plan based on anything I say but I would like you to think about the following-

In my unprofessional opinion you should pick an oncologist who is the best oncologist you can find, who is the most knowledgeable about TNBC. A really good Breast Medical Oncologist is one, from my experience, who can guide you on your journey but doesn't have to be super close to your house. I know only one Breast Medical Oncologist in CT but I would suggest you see him, even if he is two hours from your house. You would not have to have your chemotherapy at his hospital but he could be a resource for you as your treatment continues. He is ex-MD Anderson Cancer Center (where I first met him about 12 years ago). He is a brilliant MD/PhD and a lovely, caring physician.

I know you seem to be focusing on cold caps or not and that is an important decision particularly if you want to keep your hair. As Andrea wrote they can work and yes it can be an inconvenience, but from what I have been told but most women have told me they would do it again.

There is a lot more a good Breast Medical Oncologist may suggest to you like genetic/molecular testing. 

Anyhow, perhaps, something to think about.

If you want to further discuss please send me a PM and I would be happy to have a Zoom conference or we can just talk by phone (happy to give you my cell). There are no charges, but again I am not a medical professional.

Alternatively, if you prefer you can write at info@sagepatientadvocates.org

Good luck, whatever you decide. And again, welcome to our family.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Harvell8 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Harvell8 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2021 at 8:22am
Hello Steve

Thank you. Today, I am seeing Dr. Vahdat from MSKCC in her office in Norwalk Hospital.  From what I read one of Dr. Vahdat's focus has been TNBC and she has worked to develop drug treatment therapies for Metastatic Breast Cancer specifically.  My family has told me to not focus on the location, they will get me there, so I am letting go.  Although I have to start soon, I would be interested in name of the doctor you mentioned.

I will have more information to share later today.  I will PM you later.

Thanks again for reaching out.  This group has been phenomenal.

Lydia
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2021 at 12:28pm
Hi Lydia,

I don't have anything to offer on the cooling cap/mittens/booties as it wasn't something used when I was treated.  However over that past decade, I've heard Dr. Linda Vahdat's name mentioned many times in this forum and she is highly respected TNBC researcher.  When she was at Cornell, she conducted a study of Copper Depletion on TNBC.  You can search her name and will find many past posts talking about it.

Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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